Check this out re fibromyalgia - big ... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Check this out re fibromyalgia - big thank you to kjay for the lead...

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fibromyalgiaresearch.org/

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kathyD64
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MaryF profile image
MaryFAdministrator

Yes well, very sad that he recently died. His work is being championed by others. I had a NHS thyroid test... I passed, in other words I was deemed fine, the criteria for testing is thought to be wrong by many. However doctors who stop outside this remit are normally persecuted. There is another group on the HU platform called Thyroid UK. They champion this doctors work, also various others. They also have a petition up to give patients a choice of treatment, ie natural dessicated as well as synthetics... as it does not suit everybody.

I had very detailed private tests over a two day period which showed with bells on, that amongst other things I was very hypothyroid!

I am sure you are also aware that there is a fibro site on HU as well!

Mary F.

kathyD64 profile image
kathyD64

Thanks Mary since sick leave i am learning alot more about the computer ;-) self taught you see but getting there i have a tablet i use but have not worked out how to cut and paste with that yet!!

will check out fibro site thank you kxx

butlertammy profile image
butlertammy

That's interesting Mary. I'd been on synthroid for 17 years before moving to the uk. I and pretty much my entire family has hypothyroid. But since moving here... And 3 thyroid tests later... They all have come back 'fine' even though I can feel that it's still off.

kathyD64 profile image
kathyD64

Perhaps its me but I just don't understand the thyriod gland or find it easy to work out brain just can't get around it my tsh is 5.6 I don't really know what that means been told normal in hosp borderline by rheumy...

So why do hyperthyriod people use throxine? A colleague in work is slim hyper tons of energy but get free script because she is on thyroxine!!!

My mum is dead now but be us my niece has hypothyriod even me dx as now her function is deemed norm on meds yet she will be pensioned off work at 32 aps test all neg then my mum couldn't conceive I was told by her sister didn't I ever notice her scar? App she had surgery in the 50-s then went on to have kids but she did not take no replacement drugs she was on hrt but no thyroxine!!

Will appreciate a simple explanation to get my head around it reading literature confuses me even more :-) :-) kathy

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kathyD64 in reply to kathyD64

Sorry typo errors suppose to read as my neice has hypo plus ME diagnosis she still is very plagued with odd symptoms always tired did end up in a&e recently hr 200 plus felt as though she was going to die thk had double up in error thyroxine dose but now on beta blocker.. I still thk she has other auto immune issues APS bloods drew a blank but from yr battle Mary we know that means nil...

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